We need a national fibromyalgia care pathway – why is the NHS dragging its feet?
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The National Health Service is failing people with fibromyalgia, with no clear system for diagnosing or treating the condition – despite revealing research.
The BBC has detailed the problems:
“People suffering from the chronic pain condition fibromyalgia are being failed by the NHS, according to new research which found patients were waiting years for diagnosis, undergoing unnecessary tests and being prescribed harmful drugs.
“Researchers at Aberdeen University said some doctors were even refusing to refer patients and dismissing them as “lazy”.
“Fibromyalgia causes pain all over the body and can bring on severe fatigue.
“Some estimates suggest one in 20 people may have the condition… There is no cure.
“It is not clear why some people develop fibromyalgia. The exact cause is unknown.
“Adele ended up paying to go private and finally got her diagnosis. She said: “The diagnosis was a relief but since then it’s been a case of there is no care pathway. You are told it’s definitely fibromyalgia you have – here are some pain killers.”
The way forward is already visible in the evidence – but, as ever with the UK’s health systems, what’s missing is the political will, clinical consistency and service design to act on it.
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Fibromyalgia has been stuck in a tragic holding pattern for decades: doctors don’t understand it, therefore they don’t diagnose it, therefore patients look “complex” or “non-compliant”, therefore doctors continue not to understand it.
This loop has harmed hundreds of thousands of people across the United Kingdom and placed enormous, unnecessary strain on carers – including me, in the 17 years I cared for someone with the condition.
But research cited in the BBC piece – yes, you need to go and read it – together with parallel work done over the last few years in pain science and primary-care modelling – points toward a route out of the mess. It’s not easy, but it is straightforward.
Here’s the practical, evidence-led path forward that the NHS could adopt now:
1. Standardised, early diagnosis as the default – not the exception
The Aberdeen team’s findings confirm what patients have said for decades: diagnosis is slow, inconsistent and heavily dependent on whether a clinician believes in the illness. That is untenable.
A national diagnostic protocol – mandated for all primary-care settings – would:
- end the “revolving door” of pointless tests
- stop patients being bounced between specialties
- give GPs confidence that they are following an accepted standard
The research already shows the criteria that work. There is no scientific justification for every clinician reinventing the wheel.
2. Replace the drug-first model with an evidence-based support-first model
MacFarlane’s team found patients overwhelmingly want personalised, non-drug support.
The literature backs that up: symptom-management education, pacing strategies, gentle progressive movement, sleep interventions and psychological support for coping all show greater long-term benefit than escalating painkillers.
The current system is backwards: patients are sent home with drugs that barely work and can cause harm, while the interventions that actually improve quality of life are either unavailable or left to charities.
A proper NHS fibro pathway would include:
- a short, structured education programme on the condition
- access to physio or occupational-therapy-led pacing and energy-management support
- brief psychological support (not to “fix” the illness, but to help cope with its unpredictability)
- diet, sleep and lifestyle guidance tailored to fibro’s known triggers
- peer support options (which have strong evidence for reducing isolation and improving self-management)
This is all cheap, scalable and already proven effective.
3. Multi-disciplinary fibro clinics – even virtual ones – to stop the ping-pong referrals
Patients are currently shunted between rheumatology, gastroenterology, neurology and pain services because nobody “owns” the condition.
The answer isn’t to expand referrals but to collate them: small teams with a rheumatologist or pain specialist, a physio, an OT and a psychology practitioner offering assessment and early-stage support.
This doesn’t require large new buildings; the evidence shows virtual clinics work very well for fibro because continuity, not geography, is what matters.
This change alone would save money: it stops duplicate tests, consultant time and unnecessary drug trials.
4. Mandatory education for clinicians
There is no future for fibro care while clinicians can simply choose not to believe in it.
Training based on pain neuroscience, central sensitisation research, and the lived experience of patients should be standard in GP training, physio training, and for consultant physicians in high-referral specialties.
Crucially, this must include challenging the outdated stigma – the “lazy”, “anxious”, “attention-seeking” stereotypes that MacFarlane’s study exposes.
These attitudes are not just unprofessional; they cause demonstrable clinical harm.
5. Carer involvement and support
My experience is typical: fibromyalgia affects whole households. Any real care pathway must formally include carers, with:
- education for carers about pacing, flare management, cognitive symptoms
- mental-health support and respite access (believe me – this is vital)
- involvement in care-planning conversations
At the moment, carers absorb the system’s failures for free. It is both inequitable and unsustainable.
6. Public-health recognition
Fibromyalgia is common – perhaps one in 20 people, as the BBC article notes – but is treated as if it is rare or marginal.
A national awareness campaign that normalises early help-seeking and reduces stigma would dramatically reduce diagnostic delay.
7. A policy shift: chronic pain as a cross-government priority
Fibromyalgia doesn’t just sit in health; it affects employment, social care, DWP assessments, public transport and mental health.
A joined-up chronic-pain strategy could:
- stop DWP assessors treating fibro as “psychosomatic”
- require employers to recognise fluctuating conditions
- integrate occupational-health support into fibro care plans
This is where political will matters most, because the failures are systemic.
What’s stopping progress?
The barrier is a mixture of:
- institutional scepticism rooted in outdated medical culture
- lack of ownership within the NHS (no specialty wants to “own” fibro)
- political reluctance to commit resources to conditions that don’t kill but do make life hell
Yet, as the Aberdeen study shows, the cost of doing nothing is higher: years of tests, inappropriate interventions, and the enormous personal cost to patients and carers.
So the answer is: a national fibromyalgia care pathway – fully funded, standardised, and designed with contributions from patients
It exists in fragments already. Scotland, Wales and some English regions have piloted versions. But what is needed is the UK-wide political decision that fibromyalgia is real, common, and deserves structured care, not dismissal.
That – combined with mandatory clinician education and a shift away from drug-first care – would end decades of neglect.
It wouldn’t cure fibromyalgia.
But it would stop the NHS worsening it.
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Labour launches plan to tackle child poverty – that will only limit it and WON’T end it
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“Labour launches long-awaited child poverty strategy” trumpeted the ticker-tape on the BBC News channel – but all the coverage seemed… well, piecemeal.
The report on the BBC News website concentrated on just one aspect, with mention of a few others, and the Guardian ran a “live blog”, which is a “bitty” way of reporting – you get small fragments.
Fortunately, that same blog published a link to the full, 116-page strategy – so I got hold of it, read it… and this is what I found:
Reporting of it is piecemeal because the strategy itself is piecemeal.
What the government has produced is more substantial than anything any administration has offered for more than a decade – but it still falls well short of a genuinely comprehensive anti-poverty strategy.
It pulls together a set of policies that were mostly announced already, and that gives the impression of coherence, but coherence is not the same as being complete or capable of solving the crisis at hand.
And how can this be a strategy to eliminate child poverty when it promises to lift only 550,000 out of poverty and leaves nearly four million to struggle?
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First the data, now the deportations: Labour cracks down on foreign delivery riders
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If you’re happy that “illegal workers” are set to be deported after a crackdown on delivery firms, think again.
It means the Labour government engineered conditions to make asylum-seekers desperate, then criminalised them for acting out of that desperation.
The result has provided a handy headline with which to distract us from the fact that the government has no coherent immigration and asylum policy whatsoever.
Here’s the BBC with the latest development:
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“The government says 60 takeaway-delivery riders found to be working illegally in the UK are facing deportation.
“The Home Office says the group are among 171 riders arrested over seven days in November in a national “enforcement blitz” in villages, towns and cities across the country.
“Border Security Minister Alex Norris has also met representatives from food-delivery firms to encourage them to do more to tackle the issue – such as using facial recognition checks to prevent riders sharing their identities with people who do not have permission to take up work in the UK.
“The Home Office says it has recently been sharing the locations of asylum hotels with food delivery companies so they can “monitor hotspots for illegal working”.
“Deliveroo, Just Eat and Uber Eats say they have increased randomised facial checks to ensure riders match their account names.”
Don’t get me wrong – illegal work by people who have come here from other countries and are not allowed to take employment here is a crime and should be punished.
But it is likely that these people feel forced into it because they have been trapped in limbo for much longer than they could ever have expected, due to a failed UK government system that has been starved of the resources it needs for more than a decade.
I wrote in July: “Banning work for asylum seekers, cramming people into hotels, and then watching them struggle to survive — it’s a vicious cycle.
“Labour is outsourcing enforcement to tech companies, instead of tackling the root causes of the UK’s migration and asylum challenges.
“The government is turning asylum seekers into suspects, and delivery drivers into potential informants – all of it cloaked in the language of “loopholes” and “illegal working.”
“It really amounts to a corporate-backed surveillance dragnet — one that disproportionately targets the people Labour once claimed to stand for: the vulnerable, the displaced, and the working class.”
A system designed that way will always produce “offenders”, because it gives people no lawful route to survival.
Now Labour is using the inevitable result as evidence that its approach is “working”.
My warning that the government was turning asylum seekers into suspects, and delivery drivers into informants, has now played out in full view.
The “enforcement blitz” described by the BBC is exactly the kind of dragnet I predicted: one driven by app-based monitoring, identity checks, and pressure on gig-economy platforms to police vulnerable people on the state’s behalf.
Labour calls this “tightening the law”, but it’s really a widening of suspicion.
The party still has no coherent immigration or asylum strategy — no plan to clear the backlog, no plan for safe routes, no plan for accommodation, no plan for integration — so it falls back on public displays of toughness to mask its own failure.
When you create a system that produces desperation and then criminalises people for responding to it, the problem is not the people – it’s the system itself.
But what else can we expect from Keir Starmer’s Labour? It is an administration that governs not by policy… but by headlines.
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Energy customers are hit AGAIN by extra costs as grid is upgraded
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Household energy bills are to rise – AGAIN – in order to fund investment in the transmission network. Wasn’t this work supposed to drive bills down?
Here’s the BBC:
“Household energy bills will rise to help fund a £28bn investment in the UK’s energy network.
“Energy regulator Ofgem has approved the funding in a five-year plan to improve electricity and gas grids. The money will go towards maintaining gas networks and strengthening the electricity transmission network.
“The work is estimated to add £108 to energy bills by 2031.
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“But Ofgem said people would end up saving about £80 more than they otherwise would, as the investment will help lower the reliance on imported gas and make wholesale energy cheaper, leading to a net energy bill rise of about £30 a year.”
I’m old enough to remember what we were told when privatisation was announced, back in the 1980s – that bills would be cheaper and the system would be upgraded, due to private investment.
This announcement is the latest proof that those claims were fantasy from the start.
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Wes Streeting’s mental health review will attack young people already crippled due to Covid
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The BBC strapline says it all: “Streeting orders review of mental health services as welfare bills rise”.
This is not about helping people; it is about finding an excuse to say they are not ill and ignore them.
Here’s the BBC’s actual article:
“Health Secretary Wes Streeting is launching an independent review into rising demand for mental health, ADHD and autism services in England.
“It will look at both whether there is evidence of over-diagnosis and what gaps in support exist.
“It comes as ministers seek to tackle a growing welfare bill – although the Department of Health and Social Care (DHSC) has stressed this review is running separately to that.
“Led by clinical psychologist Prof Peter Fonagy, the new review’s findings will be published in Summer 2026.
“NHS figures show that the number of adults aged 16 to 64 reporting mental health problems reached 22.6% in 2023-24, up from 17.6% in 2007.
“Rates are higher in the young and among the unemployed.
“It is thought one of the factors in long waits was that people who did not necessarily need treatment were ending up being referred on to waiting list when practical support, such as help with social or financial issues or a short-burst of talking therapy could provide the solution.”
This has the ring of a renewed attempt to deny the mental illnesses suffered by young people as a result of cack-handed handling of their well-being during the Covid-19 pandemic.
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(Before going forward, let’s acknowledge that Peter Fonagy has a reputation for institutional alignment and service reconfiguration rather than grassroots advocacy or patient-led approaches. His involvement signals this is not a review that is going to begin by assuming people are ill because they say they are ill. It sets expectations.)
(Oh, and the “overdiagnosis” narrative was already being used politically, long before the review was even proposed. In other words:
- Ministers want the conclusion
- They have appointed a panel to provide it
- They will then use it legislatively
That sequencing makes a mockery of the claim that this is a neutral clinical inquiry.)
I wrote about this in October this year (2025) after it was revealed that Boris Johnson’s Conservative government – that was in office during the pandemic – had failed to protect children properly.
Those children are now young adults – and many of them are claiming to suffer with the conditions that are to be examined by the review.
Let’s revisit what I wrote in October because it is even more important now:
“[Government] failures caused quantifiable, lasting harm to children and young people who were going through the education system at the time.
“The most visible damage was academic: pupils lost months of direct teaching, and although online learning filled some gaps, it was hugely unequal — children from wealthier families often had laptops, quiet spaces, and support, while poorer children did not.
“The Education Endowment Foundation found that by 2022, pupils in disadvantaged areas were on average six months behind in reading and nine months behind in maths compared with pre-pandemic levels.
“Exam outcomes in 2021 and 2022 bore this out: the attainment gap between rich and poor pupils widened for the first time in a decade.
“Arguably the most worrying legacies are behavioural and attendance problems: persistent absenteeism – missing more than 10 per cent of school sessions – has doubled compared with pre-pandemic levels.
“Suspensions and exclusions are at record highs, as schools struggle with pupils who have missed key socialisation milestones.
“Teachers report an increase in disruptive behaviour, anxiety, and disengagement from learning.
“Many children, especially those with special educational needs, found the return to school traumatic after months of isolation and unstructured time.
“One of the most striking and well-documented effects, particularly for younger children, was a delay in speech and language proficiency: nurseries and reception classes reported marked delays in speech, vocabulary, and social communication after long periods at home; there was a marked increase in referrals for speech and language therapy; and The Royal College of Speech and Language Therapists has confirmed that demand for services is still higher than before the pandemic, especially among children who started school in 2020–2021.
“The next few effects are closely linked. Firstly, children fell into screen addiction and sedentary habits. Children’s screen time soared during lockdowns, not just for learning but for entertainment and social contact.
“Public Health England has reported – consequential? – increases in obesity, poor sleep, and reduced physical fitness, with 2021 data showing one in four Year 6 children classed as obese — the highest rate ever recorded.
“The habits established then have proved hard to break: more sedentary behaviour, less outdoor play, and higher reported anxiety linked to social media dependence.
“This leads us directly to what is perhaps the most enduring consequence: mental and emotional illness.
“NHS data show that one in five children aged eight–16 now has a probable mental health disorder — up from one in nine before the pandemic. Waiting lists for CAMHS (Child and Adolescent Mental Health Services) have exploded.
“Many children developed anxiety about illness, separation, or social interaction; others experienced depression linked to loneliness or lost milestones (exams, prom, team sports).
“Teachers report that resilience and concentration levels are significantly lower than before 2020.”
Next came the most important part of my piece – the part that accused the current Labour government of trying to ignore the harm done to these young people – and in so doing, perpetuate that harm:
“Let’s clarify this in the minds of our law-makers: mental and emotional illness caused by pandemic lockdowns is now directly responsible for the surge in sickness and disability benefit claims by people aged up to 22.
“NHS data show that the number of under-25s receiving treatment for anxiety and depression has nearly doubled since 2020.
“The same cohort — those who were teenagers during lockdown — are now the young adults showing up in PIP and ESA claims, often with diagnoses of long-term anxiety, PTSD-type symptoms, or neurodevelopmental issues exacerbated by social isolation and disrupted education.
“So when the current government describes the rise in sickness and disability claims as a “fiscal problem” rather than a public health legacy, it is effectively denying the causal chain that began with state policy failures during the pandemic years.
“These are people who are suffering the direct consequences of being abandoned by government during the pandemic, and the current Labour government’s attitude to them is that it cannot afford the cost of putting them on benefit, and the NHS cannot cope with their treatment requirements (look at the size of the waiting lists) so instead it will legislate that they cannot be ill. That is how the government plans to fix its administrative problem: by denying reality. Isn’t that a worse “dereliction of duty” than Johnson’s?
“The Johnson era’s dereliction was a failure to plan and protect.
“The Labour government’s emerging one – already active in its refusal to give disability-related Universal Credit to anybody aged 22 or under – is a failure to acknowledge and respond.
“Current and recent rhetoric from Rachel Reeves, Liz Kendall and others frames benefit growth as a “crisis of inactivity”, not of health. Yet the data show that:
- Mental and behavioural disorders now account for more than half of all new incapacity claims among 16-24-year-olds.
- CAMHS waiting lists exceed 500,000 children and teenagers, with some waiting more than a year for assessment.
- Adult mental-health services are also at record overload.
“In other words, these young claimants are not malingering — they’re the same children the Covid Inquiry has… described as suffering lasting harm.
“To legislate tighter benefit conditions or “redefine” sickness so fewer people qualify is therefore to re-victimise the very generation already harmed by previous government failure.
“Labour’s current dereliction of duty is worse than Johnson’s because his was failure in the face of uncertainty; Reeves and Starmer’s is failure in full knowledge of the consequences.
“In 2020, children were abandoned because the state had no plan. In 2025, those same children — now young adults — are being abandoned again because the state has no heart.”
Isn’t Streeting’s review intended to “‘redefine’ sickness so fewer people qualify as being mentally ill”?
Isn’t it his plan to “legislate that they cannot be ill” – not only because the government “cannot afford the cost of putting them on benefit”, but also because “the NHS cannot cope with their treatment requirements”?
Don’t you wish he’d just come clean and admit it?
“Sorry, kids, but we don’t want to spend any money on the treatment you obviously need, so we’re going to pretend you’re not sick. Bye!”
And he calls himself a Labour minister.
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